I don't like all this stuff about multi system disease and spurious things about metabolism, immune cells, spots in the brain and HPA axes. Why not be honest and say we know nothing about the pathophysiology. People get it into their head that they have a problem with energy metabolism or neuroinflammation and that feeds into the quack business.
Perhaps we are so accustomed to dreadful articles for health professionals, we are too ready to grab something that actually acknowledges that ME is a physical disease, and that specifically says CBT and GET are not recommended. Too easy then to overlook the unscientific stuff that creeps in. The article would be rather short if it just said: ME is a physical disease, here's a list of the defining symptoms and most patients have other symptoms too. No one knows what causes it, what is happening physiologically, or how to treat it. But we do know CBT and GET are useless and likely to be harmful, and pacing is the patients' recommended management strategy.
Accepted it may have its shortcomings, but it does send a key message to health professionals that they need to seriously change the way they think of pwME. Some advocacy efforts will be flawed but let's not throw the baby out with the bathwater.
Presumably, when they finally understand the pathology and no one fits under the "cannot be explained by an underlying medical disorder" bit.
I mean, they kinda did: "The pathophysiology of CFS, which is not well understood" I guess the question is if one should conclude anything about what systems might be affected based on several studies that are not replicated. The answer is no I guess, but that's probably why IOM concluded it is a serious multi-systemic disease. There is definitely a serious problem with energy, but ur right were not doing us any favors assuming its due to metabolism when we have to keep all possibilities open. It`s hard to think that metabolism is not affected though, but ideas like yours of ME being a signalling disease shows that there can be other options to our presumptions.
Minor quibbles: The correct term is "chronic fatigue immunity dysfunction syndrome" I'm not convinced that we know that the fatigue is not relieved by sleep due to disturbances in sleep rhythm or quantity
I would rate my sleep over the past 2 years as about as good as it gets, as dutiful sleep hygiene as it gets. Makes no difference. Sleep is not a magical thing. Even if we're restricting to the concept of fatigue and nothing else, it's not any more alleviated in ME than it is in any other disease. This trope has to die, largely irrelevant.
